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Lymphoma - Non-Hodgkin - Childhood - Overview

This section has been reviewed and approved by the Cancer.Net Editorial Board, 09/2012

ON THIS PAGE: You will find some basic information about this disease and the parts of the body it may affect. This is the first page of Cancer.Net’s Guide to Childhood Non-Hodgkin Lymphoma. To see other pages, use the menu on the side of your screen. Think of that menu as a roadmap to this full guide.

About the lymphatic system

The lymphatic system is made up of thin tubes that branch out to all parts of the body. The lymph system carries lymph, a colorless fluid containing lymphocytes (a type of white blood cell). Lymphocytes are part of our immune system and help fight germs in the body. B-lymphocytes (also called B cells) make antibodies to fight bacteria, and T-lymphocytes (also called T cells) kill viruses and foreign cells and trigger the B cells to make antibodies.

Groups of tiny, bean-shaped organs called lymph nodes are located throughout the body at different sites in the lymphatic system. The largest areas of lymph nodes are found in the abdomen, groin, pelvis, underarms, and neck. Other parts of the lymphatic system include the spleen, which makes lymphocytes and filters the blood; the thymus, an organ under the breastbone; the tonsils, located in the throat; and the bone marrow, the spongy red tissue inside bones that makes white blood cells (cells that fight infection), red blood cells (cells that carry oxygen throughout the body), and platelets (cells that help the blood to clot).

About non-Hodgkin lymphoma

Non-Hodgkin lymphoma (NHL) is a term that refers to several, very different types of lymphoma. Lymphoma is a cancer of the lymph system. Lymphoma usually begins when cells in the lymph system change and grow uncontrollably, which may form a tumor. Occasionally, lymphoma can also begin outside the lymph node system (called extranodal), especially in children.

Because lymph tissue is found in so many parts of the body, NHL can start almost anywhere and can spread to almost any organ in the body. It most often begins in the lymph nodes, liver, or spleen but can also involve the stomach, intestines, skin, thyroid gland, or any other part of the body.

This section covers NHL in children. Learn more about adult NHL.

Types of non-Hodgkin lymphoma in children

There are three major categories of NHL in children. They are distinguished from one another by how the cells look under a microscope.

Burkitt lymphoma. This type of B-cell lymphoma commonly affects the bone marrow and central nervous system (brain and spinal cord). Burkitt lymphoma is one of the fastest growing types of cancer. It most often develops in the abdomen and may spread to other organs, including the brain. Burkitt lymphoma accounts for about 40% of NHL in children in the United States.

Large cell non-Hodgkin lymphoma (LCL). LCL, which accounts for about 25% of childhood NHL, may develop in the throat, abdomen, lymph tissue of the neck, or near the thymus (behind the breastbone). LCL is further classified into subtypes. The most common subtypes of LCL include large B-cell lymphoma (15%), which develops from B cells, and anaplastic large cell lymphoma (ALCL; 10%), which commonly develops from T cells but can arise rarely from B cells.

Lymphoblastic lymphoma (LBL). LBL accounts for about 30% of all childhood NHL. It most often develops in lymph nodes in the chest area (mediastinum) behind the breastbone (near the thymus gland) and can spread to the surface of the brain, the bone marrow, other lymph nodes, and the membranes surrounding the heart and lungs.

Find out more about basic cancer terms used in this section.

Looking for More of an Overview?

If you would like additional introductory information, explore this related item on Cancer.Net:

  • ASCO Answers Fact Sheet: Read a one-page fact sheet (available in PDF) that offers an easy-to-print introduction for this type of cancer.
  • Cancer.Net Patient Education Videos:  View two short videos led by ASCO experts in lymphoma and childhood cancers that provide basic information and areas of research.

To continue reading this guide, use the menu on the side of your screen to select another section.  

Lymphoma - Non-Hodgkin - Childhood - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 09/2012

ON THIS PAGE: You will find information about how many children learn they have this type of lymphoma each year and some general survival information. Remember, survival rates depend on several factors. To see other pages, use the menu on the side of your screen.

This year, an estimated 620 children ages 14 and younger and 420 adolescents between the ages of 15 and 19 in the United States will be diagnosed with NHL. NHL accounts for about 6% of all childhood cancers, making it the fourth most common cancer diagnosed in children. In adolescents, it accounts for 8% of all cancers and is the fifth most common diagnosed in the 15 to 19 age group. NHL occurs two to three times more often in boys than girls.

The five-year survival rate is the percentage of people who survive at least five years after the cancer is detected, excluding those who die from other diseases. The five-year survival rate for children with NHL is about 85%, but it is important to note that this depends on several factors, including the specific subtype of NHL and the stage of disease. Children with NHL who are alive and disease-free after five years are usually considered “cured” because it rare for childhood NHL to return after this much time.

Cancer survival statistics should be interpreted with caution. These estimates are based on data from thousands of people with this type of cancer, but the actual risk for a particular individual may differ. It is not possible to tell a person how long he or she will live with childhood NHL. Because the survival statistics are measured in five-year intervals, they may not represent recent advances made in the treatment or diagnosis of this cancer. Learn more about understanding statistics.

Statistics adapted from the American Cancer Society’s publication, Cancer Facts & Figures 2014, and the ACS website.

To continue reading this guide, use the menu on the side of your screen to select another section.  

Lymphoma - Non-Hodgkin - Childhood - Risk Factors

This section has been reviewed and approved by the Cancer.Net Editorial Board, 09/2012

ON THIS PAGE: You will find out more about the factors that increase the chance of developing this type of cancer. To see other pages, use the menu on the side of your screen.

A risk factor is anything that increases a person’s chance of developing cancer. Although risk factors often influence the development of cancer, most do not directly cause cancer. Some people with several risk factors never develop cancer, while others with no known risk factors do.

Although the exact cause of NHL is unknown, some children seem to have a slightly higher risk of developing the disease:

  • Those who have had illnesses related to the Epstein-Barr virus (for example, infectious mononucleosis)
  • Those who have acquired immune deficiency syndrome (AIDS)
  • Children who have received an organ transplantation
  • Children born with deficiencies in their immune systems
  • Children who have been treated with certain drugs for other types of cancer
  • Rarely, children who take phenytoin (Dilantin), a drug used to control seizures

To continue reading this guide, use the menu on the side of your screen to select another section.  

Lymphoma - Non-Hodgkin - Childhood - Symptoms and Signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 09/2012

ON THIS PAGE: You will find out more about body changes and other things that can signal a problem that may need medical care. To see other pages, use the menu on the side of your screen.

Children with NHL may experience the following symptoms or signs. Sometimes, children with NHL do not show any of these symptoms. Or, these symptoms may be caused by a medical condition that is not cancer. If you are concerned about a symptom or sign on this list, please talk with your child’s doctor. Your child’s doctor will ask you questions about the symptoms your child is experiencing to help find out the cause of the problem, called a diagnosis. This may include how long your child has been experiencing the symptom(s) and how often.

The symptoms of NHL may vary depending on where the cancer starts and what organ is involved.

General symptoms may include:

  • Swelling or lumps in the lymph nodes located in the abdomen, groin, neck, or underarm.  Swollen lymph nodes may join together to form a mass or tumor.
  • Fever that is not associated with an illness
  • Unexplained weight loss
  • Sweating and chills
  • Extreme fatigue (tiredness)

Symptoms related to tumor location may include:

  • A swollen belly, caused by a large tumor in the abdomen
  • Painful urination and bowel movements, caused by fluid build-up and a tumor around the kidneys and intestines
  • Difficulty breathing, caused by a tumor in the chest (mediastinum) near the windpipe

A serious symptom of NHL is superior vena cava syndrome (SVCS). In SVCS, a tumor in the chest behind the breastbone blocks the flow of blood in the vein that carries blood from the head and arms to the heart. This causes the head and arms to swell. SVCS is life-threatening and requires emergency medical attention.

If cancer is diagnosed, relieving symptoms and side effects remains an important part of cancer care and treatment. This may also be called symptom management, palliative care, or supportive care. Be sure to talk with your child’s health care team about symptoms your child experiences, including any new symptoms or a change in symptoms.

The next section helps explain what tests and scans may be needed to learn more about the cause of the symptoms. Use the menu on the side of your screen to select Diagnosis, or you can select another section, to continue reading this guide.  

Lymphoma - Non-Hodgkin - Childhood - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 09/2012

ON THIS PAGE: You will find a list of the common tests, procedures, and scans that doctors can use to find out what’s wrong and identify the cause of the problem. To see other pages, use the menu on the side of your screen.

Doctors use many tests to diagnose cancer and find out if it has metastasized (spread). Some tests may also determine which treatments may be the most effective. A biopsy is the only way to make a definitive diagnosis of lymphoma. Imaging tests may be used to find out whether the cancer has metastasized. Your child’s doctor may consider these factors when choosing a diagnostic test:

  • Age and medical condition
  • Type of cancer suspected
  • Severity of symptoms
  • Previous test results

The doctor will first perform a physical examination and take a complete medical history to help determine if a child has non-Hodgkin lymphoma. In addition, the following tests may be used to diagnose non-Hodgkin lymphoma:

Biopsy. A biopsy is the removal of a small amount of tissue for examination under a microscope. Other tests can suggest that cancer is present, but only a biopsy can make a definite diagnosis. The sample removed from the biopsy is studied by a pathologist (a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease). If the tumor is near the surface, the child will be given a local anesthetic to numb the area. If it is deeper inside the body, the doctor will use a general anesthetic to block the awareness of pain.

Bone marrow aspiration. Bone marrow has both a solid and a liquid part. An aspiration removes a sample of fluid with a needle. The sample is then analyzed by a pathologist. A common site for a bone marrow aspiration is the pelvic bone, which is located in the lower back by the hip. The skin in that area is usually numbed with medication beforehand, and other types of anesthesia (medication to block the awareness of pain) may be used. 

Lumbar puncture (spinal tap). A lumbar puncture is a procedure in which a doctor uses a needle to take a sample of cerebral spinal fluid (CSF) to look for cancer cells, blood, or tumor markers (substances found in higher than normal amounts in the blood, urine, or body tissues of people with certain types of cancer). CSF is the fluid that flows around the brain and the spinal cord. Doctors generally give an anesthetic to numb the lower back before the procedure.

Cytogenetic analysis. A pathologist may examine the pairs of chromosomes (strings of DNA that contain genes) from the biopsy under the microscope to check for chromosomal abnormalities. This helps the doctor identify the subtype of lymphoma and plan treatment.

Flow cytometry and immunocytochemistry. These tests help the doctor determine the subtype of non-Hodgkin lymphoma. In a flow cytometry test, cells from the lymph nodes, bone marrow, or blood are removed and treated with a fluorescent, dye-equipped antibody that attaches to DNA. The cells are then passed in front of a laser beam, which allows a special computer to measure their DNA level. Higher amounts of DNA than normal may indicate cancer. During an immunocytochemistry test, fluorescent antibodies or immunoperoxidase staining may be used to determine the subtype of non-Hodgkin lymphoma.

Imaging tests

To determine where the cancer is and whether it has spread, the doctor may use the following imaging tests:

X-ray. An x-ray is a way to create a picture of the tissues and organs inside of the body using a small amount of radiation. A chest x-ray is the most common type of x-ray taken for diagnosing NHL.

Computed tomography (CT or CAT) scan. A CT scan creates a three-dimensional picture of the inside of the body with an x-ray machine. A computer then combines these images into a detailed, cross-sectional view that shows any abnormalities or tumors. Sometimes, a contrast medium (a special dye) is taken by mouth or injected into a vein to provide better detail. CT scans of the chest and abdomen can help find cancer that has spread to the lungs, lymph nodes, and liver.

Magnetic resonance imaging (MRI). An MRI uses magnetic fields, not x-rays, to produce detailed images of the body. A contrast medium may be injected into a patient’s vein to create a clearer picture. MRIs may create more detailed pictures than CT scans.

Bone scan. A bone scan can detect injuries to the bones, which could be caused by lymphoma. It uses a radioactive tracer to look at the inside of the bones. The tracer is injected into a patient’s vein. The tracer collects in areas of the bone and is detected by a special camera. Healthy bone appears gray to the camera, and areas of injury, such as those caused by cancer, appear dark.

Positron emission tomography (PET) scan. A PET scan uses a small amount of a radioactive tracer to create pictures of organs and tissues inside the body. The radioactive tracer is injected into a patient’s vein and collects mainly in organs and tissues that use the most energy. Because cancer tends to use energy actively, it absorbs more of the radioactive substance. A scanner then detects this substance to produce images of the inside of the body.

The information from PET scans is often used with the information from a CT scan, MRI, and physical examination to decide if cancer is present in tissues. It can help show the difference between benign (noncancerous) findings from a CT scan or MRI and malignant (cancerous) tumors that may not be clear on a CT scan or MRI. The exact accuracy and role of PET scanning in NHL is not yet clear, although tumors that contain lymphoma cells often show up on a PET scan. In the future, a PET scan may help monitor aggressive types of lymphoma and the disease’s response to treatment.

Learn more about what to expect when having common tests, procedures, and scans.

After these diagnostic tests are done, your child’s doctor will review all of the results with you. If the diagnosis is cancer, these results also help the doctor describe the cancer; this is called staging. Learn more about the first steps to take after a diagnosis of cancer.

The next section helps explain the different stages for this type of cancer. Use the menu on the side of your screen to select Stages, or you can select another section, to continue reading this guide.  

Lymphoma - Non-Hodgkin - Childhood - Stages

This section has been reviewed and approved by the Cancer.Net Editorial Board, 09/2012

ON THIS PAGE: You will learn about how doctors describe a cancer’s growth or spread. This is called the stage. To see other pages, use the menu on the side of your screen.

Staging is a way of describing where the cancer is located, if or where it has spread, and whether it is affecting the functions of other organs in the body. Doctors use diagnostic tests to determine the cancer's stage, so staging may not be complete until all the tests are finished. Knowing the stage helps the doctor to decide what kind of treatment is best and can help predict a patient's prognosis (chance of recovery). There are different stage descriptions for different types of cancer. Doctors use the following stages to describe NHL in children:

Stage I: Describes cancer that occurs in only one area, either above or below the large breathing muscle that separates the chest and abdomen (called the diaphragm).

Stage II: Describes a tumor that may occur in one area and surrounding lymph nodes, or it may be found in two or more lymph nodes or other areas on the same side of the diaphragm.

Stage III: Describes any of these four cases:

  • Cancer occurs in tissue or lymph nodes on both sides of the diaphragm.
  • Cancer started in the chest (mediastinum).
  • Cancer started in the abdomen and spread throughout the abdomen and cannot be completely removed with surgery.
  • Cancer is found in the area around the spine.

Stage IV: Describes cancer that is found in the bone marrow, spinal cord, and/or brain.

Recurrent: Recurrent cancer is cancer that comes back after treatment. If there is a recurrence, the cancer may need to be staged again (called re-staging) using the system above.

Source: National Cancer Institute.

Information about the cancer’s stage will help the doctor recommend a treatment plan.  The next section helps explain the treatment options for this type of cancer. Use the menu on the side of your screen to select Treatment Options, or you can select another section, to continue reading this guide.  

Lymphoma - Non-Hodgkin - Childhood - Treatment Options

This section has been reviewed and approved by the Cancer.Net Editorial Board, 09/2012

ON THIS PAGE: You will learn about the different ways doctors use to treat children with this type of cancer. To see other pages, use the menu on the side of your screen.

In general, cancer in children is uncommon, so it can be hard for doctors to plan treatments unless they know what has been most effective in other children. That’s why more than 60% of children with cancer are treated as part of a clinical trial. Clinical trials are research studies that compare standard treatments (the best proven treatments available) with newer treatments that may be more effective. Investigating new treatments involves careful monitoring using scientific methods and all participants are followed closely to track their health and progress.

To take advantage of these newer treatments, all children with cancer should be treated at a specialized cancer center. Doctors at these centers have extensive experience in treating children with cancer and have access to the latest research. A doctor who specializes in treating children with cancer is called a pediatric oncologist. In many cases, a team of doctors works with a child and the family to provide care; this is called a multidisciplinary team. Pediatric cancer centers often have extra support services for children and their families, such as child life specialists, nutritionists, social workers, and counselors. Special activities and programs to help your child and family cope may also be available. These services can reduce emotional pain and financial concerns and should be used to the fullest extent possible.

Descriptions of the most common treatment options for NHL are listed below. Four main types of treatment are used for NHL in children: chemotherapy, immunotherapy, radiation treatment, and stem cell/bone marrow transplantation. Sometimes, the treatments are used in combination. Treatment options and recommendations depend on several factors, including the type and stage of cancer, possible side effects, and the patient’s preferences and overall health. Learn more about making treatment decisions.

The treatment of childhood NHL often involves prolonged hospital stays during each treatment cycle (one to two weeks). Some of the treatments may cause significant mucositis (inflammation of the mucous membranes) that may lead to pain, discomfort, and difficulty eating and drinking. Be sure to talk with your child’s health care team about ways to relieve such side effects.

Chemotherapy

Chemotherapy is the primary treatment for NHL. Chemotherapy is the use of drugs to kill cancer cells, usually by stopping the cancer cells’ ability to grow and divide. Chemotherapy may be given by mouth or injected under the skin or into a muscle or vein. In some cases, chemotherapy may be injected into the cerebral spinal fluid (CSF). Chemotherapy delivered by any of these ways eventually enters the bloodstream to reach cancer cells throughout the body. Chemotherapy is given by a pediatric or medical oncologist, a doctor who specializes in treating cancer with medication. A chemotherapy regimen (schedule) usually consists of a specific number of cycles given over a set period of time. A patient may receive one drug at a time or combinations of different drugs at the same time.

Because chemotherapy attacks rapidly dividing cells, including those in normal tissues such as the hair, lining of the mouth, intestines, and bone marrow, children receiving chemotherapy may lose their hair, develop mouth sores, or have nausea and vomiting. In addition, chemotherapy may lower the body’s resistance to infection, lead to increased bruising and bleeding, and cause fatigue. These side effects can be controlled during treatment and usually go away after chemotherapy is completed. The severity of the side effects depends on the type and amount of the drug being given and the length of time the child receives the drug.

Learn more about chemotherapy and preparing for treatment. The medications used to treat cancer are continually being evaluated. Talking with your doctor is often the best way to learn about the medications prescribed for you, their purpose, and their potential side effects or interactions with other medications. Learn more about your prescriptions by using searchable drug databases.

Immunotherapy

Immunotherapy (also called biologic therapy) is designed to boost the body's natural defenses to fight the cancer. It uses materials made either by the body or in a laboratory to bolster, target, or restore immune system function. Learn more about immunotherapy.

Radiation therapy

Radiation therapy is the use of high-energy x-rays or other particles to kill cancer cells. A doctor who specializes in giving radiation therapy to treat cancer is called a radiation oncologist. The most common type of radiation therapy is called external-beam radiation therapy, which is radiation given from a machine outside the body. A radiation therapy regimen (schedule) usually consists of a specific number of treatments given over a set period of time.

Radiation therapy for NHL is generally used only in emergency or life-threatening situations. For example, it may be used to treat pressure from a tumor on the windpipe or spinal cord. Also, it is used if the lymphoma affects the central nervous system (CNS; brain and spine) at the time of diagnosis or to prevent recurrence of lymphoma in the central nervous system.

Side effects from radiation therapy include fatigue, mild skin reactions, upset stomach, and loose bowel movements. Most side effects go away soon after treatment is finished. Learn more about radiation therapy.

Stem cell transplantation/bone marrow transplantation

A stem cell transplant is a medical procedure in which healthy, highly specialized cells, called hematopoietic stem cells, are given to a patient, either to replace diseased bone marrow or to help the patient’s bone marrow recover after other cancer treatment. Hematopoietic stem cells are found both in the bloodstream and in the bone marrow. Today, this procedure is more commonly called a stem cell transplant rather than bone marrow transplant, because it is the blood stem cells that are typically being transplanted, not the actual bone marrow tissue.

Before recommending transplantation, doctors will talk with the patient about the risks of this treatment and consider several other factors, such as the type of cancer, results of any previous treatment, and the patient’s age and general health.

There are two types of stem cell transplantation, depending on the source of the replacement blood stem cells: allogeneic (ALLO) and autologous (AUTO). Learn more about bone marrow and stem cell transplantation.

Palliative/supportive care

Cancer and its treatment often cause side effects. In addition to treatment to slow, stop, or eliminate the cancer, an important part of cancer care is relieving a person’s symptoms and side effects. This approach is called palliative or supportive care, and it includes supporting the patient with his or her physical, emotional, and social needs.

Palliative care can help a person at any stage of illness. People often receive treatment for the cancer and treatment to ease side effects at the same time. In fact, patients who receive both often have less severe symptoms, better quality of life, and report they are more satisfied with treatment.

Before treatment begins, talk with your child’s health care team about the possible side effects of your specific treatment plan and supportive care options. And during and after treatment, be sure to tell your child’s doctor or another health care team member if your child is experiencing a problem, so it is addressed as quickly as possible. Learn more about palliative care.   

Recurrent non-Hodgkin lymphoma

A remission is when cancer cannot be detected in the body and there are no symptoms. This may also be called “no evidence of disease” or NED. 

A remission can be temporary or permanent. This uncertainty leads many patients and families to feel worried or anxious that the cancer will come back. While many remissions are permanent, it’s important to talk with your child’s doctor about the possibility of the cancer returning. Understanding the risk of recurrence and the treatment options may help you feel more prepared if the cancer does return. Learn more about coping with the fear of recurrence.

If the cancer does return after the original treatment, it is called recurrent cancer. It may come back in the same place (called a local recurrence), nearby (regional recurrence), or in another place (distant recurrence).

When this occurs, a cycle of testing will begin again to learn as much as possible about the recurrence. After testing is done, your child’s doctor will talk with you about treatment options. Often the treatment plan will include the therapies described above (such as chemotherapy and bone marrow/stem cell transplantation) but may be used in a different combination or given at a different pace. Your child’s doctor may also suggest clinical trials that are studying new ways to treat this type of recurrent cancer.

Choice of treatment for recurrent NHL depends on three factors:

  • Whether the tumor came back in the same place or in another part of the body
  • The type of treatment the child had for the original tumor
  • The overall health of the child

People with recurrent cancer often experience emotions such as disbelief or fear. Patients and their families are encouraged to talk with their health care team about these feelings and ask about support services to help them cope. Learn more about dealing with cancer recurrence.

If treatment fails

Although treatment is successful for the majority of children with cancer, sometimes it is not. If a child’s cancer cannot be cured or controlled, this is called advanced or terminal cancer. This diagnosis is stressful, and it may be difficult to discuss. However, it is important to have open and honest conversations with your child’s doctor and health care team to express your family’s feelings, preferences, and concerns. The health care team is there to help, and many team members have special skills, experience, and knowledge to support patients and their families.

Parents or guardians are encouraged to think about where the child would be most comfortable: at home, in a home-like setting elsewhere, in the hospital, or in a hospice environment. Nursing care and special equipment can make staying at home a workable alternative for many families. Some children may be happier if they can arrange to attend school part-time or keep up other activities and social connections. The child’s health care team can help parents or guardians decide on an appropriate level of activity. Making sure a child is physically comfortable and free from pain is extremely important as part of end-of-life care. Learn more about caring for a terminally ill child and advanced cancer care planning.

The death of a child is an enormous tragedy, and families may need support to help them cope with the loss. Pediatric cancer centers often have professional staff and support groups to help with the process of grieving. Learn more on grieving the loss of a child.

Find out more about common terms used during cancer treatment.

The next section helps explain clinical trials, which are research studies. Use the menu on the side of your screen to select About Clinical Trials, or you can select another section, to continue reading this guide.  

Lymphoma - Non-Hodgkin - Childhood - About Clinical Trials

This section has been reviewed and approved by the Cancer.Net Editorial Board, 09/2012

ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are tested to see how well they work. To see other pages, use the menu on the side of your screen.

Doctors and scientists are always looking for better ways to treat children with non-Hodgkin lymphoma. To make scientific advances, doctors create research studies involving people, called clinical trials.

Many clinical trials are focused on new treatments, evaluating whether a new treatment is safe, effective, and possibly better than the current (standard) treatment. These types of studies evaluate new drugs, different combinations of existing treatments, new approaches to radiation therapy or surgery, and new methods of treatment. Children who participate in clinical trials are often among the first to receive new treatments before they are widely available. However, there is no guarantee that the new treatment will be safe, effective, or better than a standard treatment.  

There are also clinical trials that study new ways to ease symptoms and side effects during treatment and manage the late effects that may occur after treatment. Talk with your doctor about clinical trials regarding side effects. In addition, there are ongoing studies about ways to prevent the disease.

Patients decide to participate in clinical trials for many reasons. For some patients, a clinical trial is the best treatment option available. Because standard treatments are not perfect, patients are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Other patients volunteer for clinical trials because they know that these studies are the only way to make progress in treating childhood non-Hodgkin lymphoma. Even if they do not benefit directly from the clinical trial, their participation may benefit future children with non-Hodgkin lymphoma.

Sometimes people have concerns that, by participating in a clinical trial, they may receive no treatment by being given a placebo or a “sugar pill.” The use of placebos in cancer clinical trials is rare. When a placebo is used in a study, it is done with the full knowledge of the participants. Find out more about placebos in cancer clinical trials.

To join a clinical trial, parents and children must participate in a process known as informed consent. During informed consent, the doctor should list all of the patient’s options so that the person understands how the new treatment differs from the standard treatment. The doctor must also list all of the risks of the new treatment, which may or may not be different from the risks of standard treatment. Finally, the doctor must explain what will be required of each patient in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment. Learn more about clinical trials, including patient safety, phases of a clinical trial, deciding to participate in a clinical trial, questions to ask the research team, and links to find cancer clinical trials.

For specific topics being studied for childhood non-Hodgkin lymphoma, learn more in the Current Research section.

Patients who participate in a clinical trial may stop participating at any time for any personal or medical reason. This may include that the new treatment is not working or there are serious side effects. Clinical trials are also closely monitored by experts who watch for any problems with each study. It is important that patients participating in a clinical trial talk with their doctor and researchers about who will be providing their treatment and care during the clinical trial, after the clinical trial ends, and/or if the patient chooses to leave the clinical trial before it ends.

The next section helps explain the areas of research going on today about this type of cancer. Use the menu on the side of your screen to select Latest Research, or you can select another section, to continue reading this guide.  

Lymphoma - Non-Hodgkin - Childhood - Latest Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 09/2012

ON THIS PAGE: You will read about the scientific research being done now to learn more about this type of cancer and how to treat it. To see other pages, use the menu on the side of your screen.

Doctors are working to learn more about childhood NHL, ways to prevent it, how to best treat it, and how to provide the best care to people diagnosed with this disease. The following areas of research may include new options for patients through clinical trials. Always talk with your child’s doctor about the diagnostic and treatment options best for your child.

Genetics. One of the most important areas of research involves learning more about the genetic predisposition to developing childhood NHL and about how well genetic subtypes will respond to different treatment.

Immunotherapy. As explained in the Treatment section, immunotherapy (also called biologic therapy) is designed to boost the body’s natural defenses to fight the cancer. Research for NHL is investigating the use of monoclonal antibodies designed to kill lymphoma cells that make a specific protein and spare normal cells from the toxic effects of chemotherapy.

Targeted therapy. Targeted therapy is a treatment that targets the cancer’s specific genes, proteins, or the tissue environment that contributes to cancer growth and survival. For NHL, researchers are investigating specific drugs that affect the normal regulation of the lymphoma cell, while having little effect on normal cells. Learn more about targeted treatments.

Expanded use of transplantation. Other research involves reduced intensity conditioning therapy (lower doses of chemotherapy and radiation therapy, aiming to reduce complications following a transplantation) followed by allogeneic stem cell transplantation for patients with recurrent childhood NHL.

Supportive care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current NHL treatments in order to improve patients’ comfort and quality of life.

Learn more about common statistical terms used in cancer research.

Looking for More about Current Research?

If you would like additional information about the latest areas of research regarding NHL, explore these related items:

The next section addresses how to cope with the symptoms of the disease or the side effects of its treatment. Use the menu on the side of your screen to select Coping with Side Effects, or you can select another section, to continue reading this guide.  

Lymphoma - Non-Hodgkin - Childhood - Coping with Side Effects

This section has been reviewed and approved by the Cancer.Net Editorial Board, 09/2012

ON THIS PAGE: You will find out more about steps to take to help cope with physical, social, and emotional side effects. This page includes several links outside of this guide to other sections of this website. To see other pages, use the menu on the side of your screen.

Fear of treatment side effects is common after a diagnosis of cancer, but it may help to know that preventing and controlling side effects is a major focus of your child’s health care team. This is called palliative or supportive care, and it is an important part of the overall treatment plan, regardless of the stage of disease.

Common side effects from each treatment option for non-Hodgkin lymphoma are described in detail within the Treatment section. Learn more about the most common side effects of cancer and different treatments, along with ways to prevent or control them. Side effects depend on a variety of factors, including the cancer’s stage, the length and dosage of treatment(s), and your child’s overall health.

Before treatment begins, talk with your child’s doctor about possible side effects of each type of treatment your child will be receiving. Ask which side effects are most likely to happen, when they are likely to occur, and what can be done to prevent or relieve them. And, ask about the level of caregiving your child may need during treatment and recovery, as family members and friends often play an important role in the care of a person with non-Hodgkin lymphoma. Learn more about caregiving.

In addition to physical side effects, there may be psychosocial (emotional and social) effects as well. Patients and their families are encouraged to share their feelings with a member of their health care team who can help with coping strategies. Learn more about the importance of addressing such needs, including concerns about managing the cost of your child’s cancer care

During and after treatment, be sure to tell the health care team about the side effects your child experiences, even if you feel they are not serious. Sometimes, side effects can last beyond the treatment period, called a long-term side effect. A side effect that occurs months or years after treatment is called a late effect. Treatment of both types of effects is an important part of survivorship care. Learn more by reading the After Treatment section or talking with your child’s doctor.

The next section helps explain medical tests and check-ups needed after finishing cancer treatment. Use the menu on the side of your screen to select After Treatment, or you can select another section, to continue reading this guide.  

Lymphoma - Non-Hodgkin - Childhood - After Treatment

This section has been reviewed and approved by the Cancer.Net Editorial Board, 09/2012

ON THIS PAGE: You will read about your medical care after cancer treatment is finished and why this follow-up care is important. To see other pages, use the menu on the side of your screen.

After treatment for childhood NHL ends, talk with your child’s doctor about developing a follow-up care plan. This plan may include regular physical examinations and/or medical tests to monitor your child’s recovery for the coming months and years. All children treated for cancer, including NHL, should have life-long, follow-up care.

Long-term, follow-up care is critical for all children with NHL. Even though the risk of recurrence begins to decline after three years, long-term complications are possible. Based on the type of treatment the child received, the doctor will determine what examinations and tests are needed to check for long-term side effects, such as heart problems and/or infertility (inability to have a child). The risk of secondary cancers after treatment of childhood NHL is also possible, although the risks are only 1% to 2%. Yearly follow-up care by an experienced health care team is highly encouraged for survivors of childhood NHL. Follow-up care should also address the child’s quality of life, including any developmental or emotional concerns. Learn more about childhood cancer survivorship.

The child’s family is encouraged to organize and keep a record of the child’s medical information. That way, as the child enters adulthood, he or she has a clear, written history of the diagnosis, the treatment given, and the doctor’s recommendations about the schedule for follow-up care. The doctor’s office can help you create this. This information will be valuable to doctors who care for your child during his or her lifetime. ASCO offers cancer treatment summary forms to help keep track of the cancer treatment your child received and develop a survivorship care plan once treatment is completed.

Children who have had cancer can also enhance the quality of their future by following established guidelines for good health into and through adulthood, including not smoking, maintaining a healthy weight, eating a balanced diet, and participating in regular physical activity. Talk with the doctor about developing a plan that is best for your child’s needs. Learn more about the next steps to take in survivorship.

Find out more about common terms used after cancer treatment is complete.

The next section offers a list of questions you may want to ask. Use the menu on the side of your screen to select Questions to Ask the Doctor, or you can select another section, to continue reading this guide.  

Lymphoma - Non-Hodgkin - Childhood - Questions to Ask the Doctor

This section has been reviewed and approved by the Cancer.Net Editorial Board, 09/2012

ON THIS PAGE: You will find some questions to ask your doctor or other members of your health care team, to help you better understand your diagnosis, treatment plan, and overall care. To see other pages, use the menu on the side of your screen.

Talking often with the doctor is important to make informed decisions about your child’s health care. These suggested questions are a starting point to help you learn more about your child’s cancer care and treatment. You are also encouraged to ask additional questions that are important to you.

  • What type of NHL has been diagnosed?
  • What is the stage of the disease? What does this mean?
  • Can you explain my child’s pathology report (laboratory test results) to me?
  • What are the treatment options?
  • What clinical trials are open to my child?
  • What treatment plan do you recommend? Why?
  • What chemotherapy or immunotherapy will my child receive?
  • Should my child receive a bone marrow/stem cell transplantation?
  • Will my child receive radiation therapy?
  • Will my child need to stay in the hospital? If so, for how long? How often?
  • Who will be part of my child’s health care team, and what does each member do?
  • Who will be coordinating my child’s overall treatment and follow-up care?
  • What are the possible side effects of this treatment, both in the short term and the long term?
  • How will this treatment affect my child’s daily life? Will he or she be able to go to school and perform his or her usual activities?
  • Will this surgery affect my child’s ability to become pregnant or have children in the future? If so, should we talk with a fertility specialist before treatment begins?
  • If I’m worried about managing the costs related to my child’s cancer care, who can help me with these concerns?
  • What follow-up tests will my child need, and how often will he or she need them?
  • What support services are available to my child? To my family?
  • Whom do I call for questions or problems?

The next section offers some more resources that may be helpful to you. Use the menu on the side of your screen to select Additional Resources, or you can select another section, to continue reading this guide.

Lymphoma - Non-Hodgkin - Childhood - Additional Resources

This section has been reviewed and approved by the Cancer.Net Editorial Board, 09/2012

ON THIS PAGE: You will find some helpful links to other areas of Cancer.Net that provide information about cancer care and treatment. This is the final page of Cancer.Net’s Guide to Childhood NHL. To go back and review other pages, use the menu on the side of your screen.

In addition to Cancer.Net, there are other sources of information about this type of cancer available online. Cancer.Net maintains a list of national, not-for-profit organizations that may be helpful in finding additional information, services, and support. As always, be sure to talk with your child’s doctor about questions you may have about information you find about this disease.

View organizations that offer information on this specific type of cancer.

This is the end of Cancer.Net’s Guide to Childhood NHL. Use the menu on the side of your screen to select another section, to continue reading this guide.